Watching My Parents Die Convinced Me To Plan A Completely Different Path — And My Idea Came From A Movie
'You just made me spit out my coffee,' my sister texted back with a laughing-crying emoji.
The mental image of Lisa doing a spit take at work was a small consolation for seeing my dad in this diminished state. No longer able to navigate a trip to the bathroom on his own, he'd ended up on the tile floor at 3 a.m. with his pajama pants bunched around his knees. He was too weak to get himself back to bed.
Dad had entered hospice a few weeks before this episode because he was dying from a rare bone marrow cancer. He had only six weeks to live, and I'd flown across the country to be his in-home hospice caregiver. Lisa eventually joined me in Dad's house as co-caregiver. She saw his junk, too.
Along with confirming that I would have made a lousy nurse, the experience raised a nagging question that would haunt me in the following years: With no kids of my own, who will take care of me when my time comes?
When I first arrived in Michigan to help my dad, I didn't believe he would die in a little over a month. The man seemed fine, puttering around the house on his own and laughing with family during visits. There really wasn't much for me to do, other than to make sure he took his meds each morning and cook something for dinner before 'Jeopardy!' came on. But just as hospice predicted, Dad declined a little each week. He became fatigued and unsteady on his feet, requiring a walker and eating less and less of the food I prepared.
His pain increased to the point where morphine was no longer up to the task, and the hospice nurse — who came to Dad's house just once a week for a quick check-in — asked me if I thought it was time for a fentanyl patch.
'I'm a magazine editor,' I thought. 'How the hell should I know?'
One day, while I was pushing Dad around the living room in his wheelchair, he murmured, almost under his breath, 'I want to die.' I wanted that for him, too.
Six years after my 74-year-old dad succumbed to his illness, I discovered that my mom had vascular dementia, and that she was already years into the disease. The realization blindsided me during an otherwise normal phone chat.
Related:
Related:
Out of the blue, Mom said she wanted to tell me a secret: Someone named Lisa had been calling her, and she had no idea who this person was. Mom had been playing along during their conversations because she didn't want to offend the nice woman on the phone.
With a shaky voice I explained that Lisa was her firstborn daughter. Mom sounded surprised, exclaiming, 'Really!' as if I'd told her that the neighborhood squirrels had just flown a nut-shaped rocket to the moon.
With me in California, Lisa in Michigan and Mom living alone in South Carolina — she never remarried after divorcing my dad decades earlier — the situation required a whole other level of caregiving. The excruciating, long-distance kind.
Two years of hell followed Mom's late diagnosis. Managing her care became a second job, made even more difficult by the fact that she had no financial resources and I had to raid my retirement savings to help pay for it.
As Mom's dementia escalated, she sometimes called me several times a day in agitation and confusion, telling me about a mysterious and frightening man who'd somehow gotten into her apartment and was moving things around. Sometimes, she said, he left items there that were not hers.
'The man,' as she called him, did not exist; like many people with dementia, my mom suffered from hallucinations and delusions.
We kept Mom in her apartment as long as possible, as she would have wanted, but in-home caregivers proved scarce and unreliable in her small town. She eventually got to the point of needing 24-hour care, costing almost $600 a day, and the agency we hired 50 miles away had only one person available in Mom's area.
One weekend, when her regular caregiver couldn't come, a neighbor called to tell me that the agency had left Mom to fend for herself for the past two days, and that paramedics were on the scene. Lisa and I started making plans to get her out of there the next day.
Mom was far better off in assisted living, though she wasn't always happy about her new accommodations. A fiercely private person all her life, she didn't understand why staff members kept coming into her room uninvited, pushing aside the assorted items she'd used to barricade the door and insisting she go down to the dining room for meals.
I wouldn't have wanted to come out of my room, either; the facility was dated and depressing — but it was the best that Lisa and I could manage. At 78 years old, Mom was younger than most of the other residents there and among only a few who could walk around the place unassisted. Until she started falling.
Related:
In the span of a couple of months, she broke both hips and fractured her shoulder, confining her to a wheelchair. Immobility and subpar care led to a gruesome pressure wound on her foot that her depleted, 65-pound body could never heal.
What kind of society insists on keeping a person alive in that condition? In her predementia days, my mom — always quick with a joke or a biting comment — would have said, 'Just get a gun and shoot me.'
When Mom died last year, the day before Mother's Day, I cried with both sorrow at her unfair, horrible ending and with relief that it was finally over. Yet, the nagging question remained about my own uncertain future.
Caring for my parents, I'd become increasingly obsessed with the idea that I was doomed to spend my final years in a dreary care facility surrounded by strangers, just waiting for the end to come. While I realize that having kids does not guarantee that they will someday take care of you, I also know that there is a zero percent chance that your nonexistent offspring will do it. This thought filled me with a crushing sense of fear and foreboding about getting older. That is, until I resolved to plan my own death.
The idea surfaced gradually from some hidden cranny of my subconscious, reminding me of my favorite movie since high school: 'Harold and Maude.' In this 1971 dark comedy starring the great Ruth Gordon, a morbid young man falls in love with a free-spirited septuagenarian. In the film's climax, Maude carries out a long-held plan to end her life on her 80th birthday, on her own unconventional terms. Why shouldn't I be like Maude?
At first, I thought my death would have to be a DIY affair. I knew that if I wasn't going to die from an incurable illness within six months, or if I had dementia, that would disqualify me from the 'medical aid in dying' options offered by a growing number of states. Though well intentioned, these programs are so mired in bureaucracy and restrictions that even patients who qualify often die while waiting for approvals.
Advocacy groups like Death With Dignity are working to streamline and expand end-of-life options across the country, but the wheels turn slowly. And if you have dementia, like my mom, or just feel like you've had a good run after 90 years on the planet? No soup for you!
Determining how to bring about a dignified, pain-free ending without medical help was a daunting prospect, so I began workshopping the idea — only half-joking — with friends. Would my college pal, an anesthesiologist, be willing to risk prison time to help me out? What kind of bribe money would I need to convince a veterinarian to do the deed?
Then, in the months after my mom's death, an acquaintance recommended Amy Bloom's 'In Love: A Memoir of Love and Loss,' a heartbreaking book that chronicles the author's journey to Zurich to witness the assisted death of her husband, who'd been diagnosed with early Alzheimer's.
Related:
I was astonished to learn that, in Switzerland, assisted death has been legal for over 80 years. It's lawful as long as the person is of sound mind and is able to self-administer the life-ending pharmaceutical cocktail. Dignitas, a nonprofit that Bloom writes about in her memoir, requires that the individual have an illness that will eventually lead to death — including dementia — or be living with an unbearable disability. Another organization, Exit International, also lays out options for older adults and couples who want to go together.
Exit's founder, Philip Nitschke, even invented a futuristic, 3D-printable pod designed to deliver a euphoric, painless death without the need for assistance. The third-generation prototype is still in the testing phase, but in the meantime, Nitschke's nonprofit offers an array of 'final exit' resources, including guides to life-ending drugs and assisted death programs in Switzerland.
Though some may find it macabre, learning about organizations like Dignitas and Exit International has brought me an incredible sense of peace and comfort in knowing that I have options. Instead of feeling overwhelmed with constant dread of getting older, I can focus on living.
Still, I can't help thinking about what will happen if I can't make it to Zurich when I feel like it's time to sign off. Wouldn't it be wonderful for Swiss-style options to be available here in the United States, and affordable to all? Then, those who decide to opt out could do so on their home turf surrounded by loved ones, without adding physical or financial burdens to the process.
I realize that not everyone would welcome this. However, I believe that, like abortion, end-of-life decisions are a personal choice that should be made by the individual. If you don't believe in it, don't do it. And if the Swiss can avoid the so-called slippery slope for 80-plus years through tight regulation and documentation, the U.S. can figure it out, too.
My husband of 22 years, my beloved companion on life's journey, says he isn't quite ready to sign up for the BOGO assisted-death special — a final date night, if you will — but a lot can happen in the next couple of decades. We could both expire well before the need for such a plan arises, or I could simply change my mind. It's enough for me to know that I need not be forced to keep living beyond my self-determined expiration date — even if I have to travel all the way to Switzerland to pull the plug. I can do it Maude's way.
Tina Caputo is a multimedia journalist and writer based in California. Her work has appeared in McSweeney's, The Belladonna Comedy, and too many wine and lifestyle publications to mention.
This article originally appeared on HuffPost in August 2024.
Also in Goodful:
Also in Goodful:
Also in Goodful: Solve the daily Crossword
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Yahoo
23 minutes ago
- Yahoo
60-Year-Old Gave Himself Early 20th Century Psychosis After He Went To ChatGPT For Diet Advice
A 60-year-old man gave himself an uncommon psychiatric disorder after asking ChatGPT for diet advice in a case published Tuesday by the American College of Physicians Journals. The man, who remained anonymous in the case study, told doctors he had eliminated sodium chloride, commonly known as table salt, from his diet after reading about its negative health effects. He said he could only find sources telling him how to reduce salt, but not eliminate it completely. Inspired by his nutrition studies in college, the man decided to completely eliminate sodium chloride from his diet as a personal experiment, with consultation from Chat GPT, researchers wrote. He maintained multiple dietary restrictions and even distilled his own water at home. 'For 3 months, he had replaced sodium chloride with sodium bromide obtained from the internet after consultation with ChatGPT, in which he had read that chloride can be swapped with bromide, though likely for other purposes, such as cleaning,' the case study read. While excess sodium can raise blood pressure and increase the risk of health issues, it is still necessary to consume a healthy amount of it. The man, who had no psychiatric history, eventually ended up at the hospital, worried that his neighbor was poisoning him. He told doctors he was very thirsty, but paranoid about the water he was offered. 'In the first 24 hours of admission, he expressed increasing paranoia and auditory and visual hallucinations, which, after attempting to escape, resulted in an involuntary psychiatric hold for grave disability,' the study read. Doctors concluded that the man was suffering from bromism, or bromide toxicity, a condition that is rare today but was more common in the early 20th century. The research noted that bromide was found in several over-the-counter medicines back then and contributed to up to 8% of bromism-related psychiatric admissions at that time. The hospital treated the man for psychosis and discharged him weeks later. His case highlights the potential pitfalls of using AI to seek medical tips. Dr. Margaret Lozovatsky, a pediatrician, warned last year that AI often misses crucial context. 'Even if the source is appropriate, when some of these tools are trying to combine everything into a summary, it's often missing context clues, meaning it might forget a negative,' she told the American Medical Association. 'So, it might forget the word 'not' and give you the opposite advice.' Related... ChatGPT Was Asked To List Everyone Trump Has Called 'A Low-IQ Individual' — And It's Pretty Racist Elon Musk Soft Launches 'NSFW' AI Companion A Week After Chatbot Goes On Antisemitic Tirade These Tragic AI Fails Are Proof That You Can't Fully Rely On ChatGPT To Plan Your Trip
Yahoo
39 minutes ago
- Yahoo
Signs Of MS Can Appear 15 Years Before Diagnosis, Says Study—And Many Women Miss These Early Clues
It's easy to assume that you'd know when you're dealing with a disease as serious as multiple sclerosis. But it can take years for people with MS to get a proper diagnosis. Now, new research suggests that subtle symptoms of the disease may show up even 15 years before someone gets diagnosed with MS. In case you're not familiar with it, MS (multiple sclerosis) is a chronic condition where the body's immune system mistakenly attacks the protective covering of nerve fibers. People can experience a range of symptoms with MS, including vision problems, muscle weakness, tingling in the arms and legs, and muscle spasms, according to the National Institute of Neurological Disorders and Stroke (NINDS). Some people with MS will eventually develop partial or complete paralysis, per NINDS. The findings of the new JAMA Network Open study are shocking, and raise a lot of questions about how people can tell if their symptoms are due to something minor or a condition as serious as MS. Here's what neurologists want you to know. Meet the experts: Clifford Segil, DO, is a neurologist at Providence Saint John's Health Center in Santa Monica, CA; Amit Sachdev, MD, MS, is the medical director in the Department of Neurology at Michigan State University. What did the study find? For the study, researchers analyzed the health records of about 2,000 people in British Columbia. They discovered that people who were eventually diagnosed with MS started interacting with the healthcare system more frequently 15 years before they first had symptoms that were later identified as being due to MS. Every person's health journey was different, but the researchers were able to pick up general trends. People who were eventually diagnosed with MS started seeing general practitioners more frequently 15 years before they were diagnosed for symptoms like fatigue, pain, dizziness, and mental health conditions like anxiety and depression. In the 12 years before their diagnosis, the patients saw a psychiatrist more often. Eight to nine years before a diagnosis, they had more frequent visits to neurologists and eye doctors, which may have been linked to blurry vision or eye pain. Three to five years before they were diagnosed, they visited the ER and had radiology visits more often. A year before their diagnosis, the patients saw physicians more often across a range of specialties, including neurology, emergency medicine, and radiology. This suggests 'that MS may have started earlier than previously thought,' the researchers wrote in the conclusion. Why might MS be so hard to detect this early? MS can look slightly different for everyone, and there is a wide range of symptoms, points out Amit Sachdev, MD, MS, medical director in the Department of Neurology at Michigan State University. MS is an autoimmune disease, and it can cause inflammation throughout the body, he explains. 'With excess inflammation, the body may feel generally dysfunctional,' Sachdev says. Meaning, you can feel lousy overall or in a lot of areas, making it hard for doctors (and you) to pin down what could be behind this. People with MS can also struggle with fatigue, which can be a tough symptom to tie to any one condition, Sachdev says. Symptoms like pain, mood changes, and fatigue tend to be linked more to an MS diagnosis after it's made, because they can be due to a range of health conditions, says Clifford Segil, DO, a neurologist at Providence Saint John's Health Center in Santa Monica, CA. He says he tends to discover these symptoms when he looks back at patient's health history after an MS diagnosis. What should you do if you're having these symptoms? Doctors say it's a stretch to suggest that you should assume you have MS if you're only dealing with fatigue or mood changes. But Sachdev says you also shouldn't brush off symptoms that just don't quit. 'Health is deeply personal. To manage it, you need to begin with a provider that connects with you,' he says. 'Ideally, you would begin with a single observation or concern that is bothersome. Focusing on this issue with that provider is the place to start.' But Segil stresses the importance of seeing a specialist if you're dealing with several symptoms you really can't explain. 'Whenever you have a constellation of symptoms which are without a clear medical diagnosis, seeing a neurologist may be wise,' he says. They can help take a careful assessment of your health history, along with ordering testing, to see what could be going on. You Might Also Like Jennifer Garner Swears By This Retinol Eye Cream These New Kicks Will Help You Smash Your Cross-Training Goals
Yahoo
an hour ago
- Yahoo
12 Bath Products For Babies and Toddlers
Splish splash, it's time for baby's bath. Rubber duckies, bubble bath soap, and cozy towels are all classic baby bath time staples. Now, in addition to those childhood favorites, there are more products on the market than ever before for parents to choose from. Between shampoo and wash, toys and aftercare, the drugstore aisle can get a little overwhelming. Don't fret. Instead, here are some suggestions for suds (and other helpful stuff) that make for a more blissful bath time. Bath Support Assuming your bathtub is too big for a little baby (which is more than likely), here's a tool to help them lay comfortably in the tub and free your hands for soaping, shampooing and rinsing. Wash Time to get fresh and clean, without worrying about skin sensitivities. Shampoo & Wash Save time (and space) with these 2-in-1 bath products. Bath Toys Add some entertainment to bath time with toys. Who said getting clean isn't fun? Hair Brush Even babies have flyaways and messy hair. Thankfully, there are tools to gently fix baby's bedhead. Booger Help Stuffed noses happen, but nasal assistance is on the way! Baby Oil Although baby oil can be used to moisturize on it's own, it can also be added to bath time. Lotion Dermatologist-tested lotion for the whole body (and the whole family) is a win. Apply after bathing and as needed. Towels When the bath ends, it's time to dry off with absorbent towels that are soft to the touch. Toothbrush It's never too early to start a good oral hygiene routine.
